|Date||18 June 2012|
Location: Korsor, Denmark
Musholm centre, Korsør, DK, June 15-17, 2012
The ENMC, celebrating its 20th anniversary, invited a group of representatives from its members, from disease-specific patient organisations and from industry to attend a special workshop, addressing the future role and positioning of the ENMC.
This workshop took place from June 15-17 at the Musholm center in Korsør, Denmark, and was prepared by an organizing committee consisting of representatives from the ENMC member organisations.
The current status and (possible) future developments were presented and addressed by a number of invited presentations:
A patient voice for 40 years
Evald Krog (Muskelsvindfonden, Denmark)
EU policy in the field of rare diseases: opportunities and challenges for the neuromuscular community
Dr Ségolène Aymé (EUCERD, France)
Prospects in neuromuscular disorders: from micro to macro perspective and vice versa
Dr Andoni Urtizberea (Assistance-Publique Hôpitaux de Paris, France)
In order to prepare for a common vision and agenda for the ENMC, the view from different groups of stakeholders (patients, scientists/clinicians and industry) were obtained from separate, parallel sessions, the results of which were subsequently discussed in depth by all participants.
Using the input from these sessions, the participants also discussed and defined the priorities for the future strategy of the ENMC, taking into account the unique position the ENMC has been able to obtain in the neuromuscular research community.
The participants unanimously shared their enthusiasm and appreciation for what the ENMC has accomplished and how the organisation has been operating as a small, independent and well-respected entity with a large impact.
From this strong position, the ENMC should strive to become more visible and also develop tools, activities and procedures that will further strengthen the patient´s voice in the future research agenda.
The participants specifically agreed:
1) to sharpen the patient profile in ENMC’s workshops
2) that all ENMC workshops should have attendance of up to three patient representatives
3) that patient representatives should be subject to certain requirements and expectations
4) that ENMC will offer support to the work of patient representatives
5) that patient representatives should be part of ENMC’s ‘Patient Voice’ and communicate the results of the workshops
6) that patient representatives can take initiative to apply for ENMC workshops
7) that this type of Patient Voice workshop should be repeated within an appropriate period of time.
For a summary report of this event, please click here